Sean's Story

Sean Ries turned 5 years old on Valentine's Day 2012. Sean has a sparkling personality, gives great hugs, and is quite an aspiring athlete. He loves sports, video games, dinosaurs, Spider Man, and his big brother Brian, age 8.

On February 6, 2012, Sean was diagnosed with a large tumor (bigger than a golf ball!) in the left side of his brain, and he underwent his first surgery the next day to do a biopsy. His tumor, a dysembryoplastic neuroepithelial tumor (DNET) is classified as a Grade 1 (i.e., low-grade, slow growing) glioma. There are only 1,000 cases of pediatric low-grade gliomas each year in the United States, and DNET represents just 1.2% of all brain tumors in patients under the age of 20. The first sign that anything was wrong with Sean was a mild seizure that occurred on February 2, 2012.

Early indications were that further surgery was not an option given the complexity, size and location of the tumor, which is in or near his speech and motor centers. The only treatment option initially offered to the family was a long course (15 - 18 months) of weekly chemotherapy. Despite being on multiple anti-seizure medicines, Sean's seizures continued to increase in frequency and severity, and before starting down the chemotherapy path, this opinion was revised. Action had to be taken, and sooner rather than later.

Parents Brenda and Richard sought out treatment options from some of the best hospitals in the northeast and across the country. They traveled to New York, Philadelphia and Boston for opinions, and consulted with doctors in New Jersey, Texas, Tennessee, Maryland, and North Carolina. Brenda took a leave of absence from work to focus all of her energy on Sean as the family sought out opinions for appropriate next steps in his treatment.

After weeks of consult and more tests to isolate Sean's speech and motor functions in relation to the tumor, Brenda and Richard ultimately decided on pursuing surgery with Dr. Jeffrey Greenfield and the treatment team at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. Sean underwent a two-stage extensive brain surgery on May 16th and 22nd, where approximately 80% of the tumor was successfully removed. However, Sean still has a long battle ahead of him. He continues to take anti-seizure medications, and is facing some cognitive and neurological challenges as a result of all that he has been through. Also, the portion of the tumor that remains is very problematic as it is intertwined with healthy tissue in parts of the brain which control speech, motor activity, and vision, and the experts don't feel they can safely remove it. At this time, his future treatment includes “active surveillance” which means regular monitoring (every 3 months) via MRI to watch for tumor changes/growth, Speech and Occupational therapy to address the cognitive and neurological issues he is dealing with, and possibly more aggressive treatment when Sean gets older. In the event further surgery is required, the likelihood is that it would result in a severe neurological deficit requiring substantial rehabilitation for Sean.

Unfortunately, survivors of childhood brain tumors frequently develop problems in the areas of intellectual ability, academic achievement, memory, and attention. Although many different factors are probably responsible for these changes, including tumor location and surgery, age (younger than 7 years) at diagnosis is one of the major risk factors for neurocognitive impairments. Learning disabilities are particularly common among brain tumor survivors, and many children (including Sean) will require special education services at school. It is extremely important to assess cognitive functioning, and Sean is currently undergoing a battery of neuropsychological tests with a pediatric neuropsychologist to evaluate where his deficits are.

In September 2012, Sean was excited to be able to start Kindergarten right along with his friends. Just the week before the first day of school, he underwent his first follow-up MRI at MSKCC. Sean's oncologist was happy to report that the results showed his tumor had remained stable since his post-surgery scan in May. This meant no evidence of new or progressive growth! The next scan will be sometime in late November. Until then, Sean and his family are making the most of everyday, and fighting...praying for a cure.

UPDATE

Sean’s most recent MRI in January 2014 showed that his tumor remains stable! He is still on anit-seizure medication, but he has not had any breakthrough seizures since his surgeries in May 2012. Sean is in 1st grade this year and doing well, but does require special education support as he struggles to overcome some of the deficits he has as a result of all that he has endured. Sean also has a great therapy team supporting him at Children’s Specialized Hospital where he continues to go for rehab two days a week. This summer, he has been invited by his beloved Dr. Greenfield to attend a week at the Hole in the Wall Gang Camp for children with cancer. He can’t wait!

What is TEAMSean?

TEAMSean is dedicated to supporting the Ries family and is comprised of many family, friends, colleagues, and supporters. We are also committed to raising awareness for this deadly disease, and funding research at the Children’s Brain Tumor Project that will hopefully one day lead to a cure.

TEAM stands for Together Everyone Achieves Miracles

Together Everyone Achieves Miracles and can make a difference in the life of this child!

To find out more about Sean's story, go to www.CarePages.com and look for SeanRies (one word).

2014 Events to Support

Stupid Cancer Happy Hour – If you think cancer is stupid, this happy hour is for you! From 4 to 7 p.m. at Pure Parsippany on Friday, Feb. 7, customers can enjoy a 50-percent off Happy Hour with DJ Tito on hand. The event is the first of its kind, and proceeds will benefit St. Jude Children’s Research Hospital and TEAMSean. Look for another event like this in the fall.!

2nd Annual "BANDs TOGETHER AGAINST BRAIN TUMORS" – On Sunday, May 18, 2014, TEAMSean will be hosting this event from 1:00-6:00 PM at Taste Bar & BIstro in Randolph, NJ. This charity concert will feature live music by Art of Play, Hoi Polloi, Three Date Theory, and Steel Margarite. There will also be face painting by Bella Faccia, balloon creations by Tweedles the Clown, strolling Magic by Marco, a silent auction, photo booth, and Origami Owl Living Lockets by local designer Denise Curran. In addition, 20% of your food/bar purchase at Taste will be donated to the cause!

TEAMSean will be donating a portion of the proceeds from this event directly to the Children's Brain Tumor Project, the research effort at the Weill Cornell Pediatric Brain and Spine Center under the direction of Sean's beloved neurosurgeon, Dr. Jeffrey Greenfield.

Color Vibe 5K – TEAMSean will be participating in the inaugural Morris County Color Vibe 5K race on Saturday, June 28, 2014 in Morris Plains, NJ. The TEAM will be out there representing to help raise awareness for pediatric brain tumors. Kids are welcome to participate in this fun event!

Click here to register and join the TEAM. Just select TEAMSean from the dropdown list. The password to join the TEAM is “seansmiracle”.

Head for the Cure – TEAMSean will once again be participating in the Head for the Cure Foundation MetroKC 5K. Stay tuned for more details on how to register for this event that will take place in August 2014.

Bizzie Bowl 2014 – Stay tuned for more details on this great event planned for the fall 2014!

Children’s Brain Tumor Project 5K – Stay tuned for more details on this great event planned for September 2014!! This event will take place in Bronxville, NY (hometown of Sean’s beloved Dr. Greenfield). We want a BIG TEAM to represent and support this inaugural event for the CBTP.

2013 Past Events

Mara's Café and Bakery - Fun for everyone all summer! The TEAMSean Cupcake Fundraiser is still underway at Mara's Café and Bakery in Denville, NJ. Stop by anytime and get your TEAMSean Cupcake, and 20 cents from each one sold will be donated to TEAMSean!! For some added family fun, go on a Monday night when Tweedles the Clown is making amazing balloon creations every week from 6-8 PM.

1st Annual "BANDs TOGETHER AGAINST BRAIN TUMORS" - On Sunday, May 19, 2013, TEAMSean will be hosting this event from 1:00-6:00 PM at the Rattlesnake Ranch Café in Denville, NJ. This charity concert will feature live music by Art of Play, Supernova, and Hoi Polloi. There will also be face painting by Bella Faccia, strolling Magic by Marco, a 50/50 drawing, raffle, and Origami Owl Living Lockets by local designer Denise Curran. In addition, 15% of your food/bar purchase at the Rattlesnake will be donated to TEAMSean!

TEAMSean will be donating a portion of the proceeds from this event directly to the Children's Brain Tumor Project, the research effort at the Weill Cornell Pediatric Brain and Spine Center under the direction of Sean's beloved neurosurgeon, Dr. Jeffrey Greenfield.

Moving Towards a Cure® Brain Tumor 5K/10K Run/Walk – TEAMSean will again be participating in this 2nd Annual Moving Towards a Cure® New York City event, to be held on Saturday, July 27, 2013, in Flushing Meadows Corona Park, Queens. Miles For Hope, the organization that sponsors this event, was founded to fund brain tumor research and clinical trials, and will again partner with the Weill Cornell Pediatric Brain and Spine Center for this 2013 New York event. Proceeds from the event will benefit the Weill Cornell Children's Brain Tumor Project, as well as provide financial assistance to families that must travel for treatment or clinical trials.

Click here to make a donation or sign up to join TEAMSean for this great event.

Rock & Roll 10k - TEAMSean will again be participating in the Rock & Roll 10k in NYC on Saturday, October 12, 2013 to support Elizabeth's Hope and the Weill Cornell Children's Brain Tumor Project (the research effort led by Sean's neurosurgeon Dr. Jeffrey Greenfield). Details on how to make a donation and support TEAMSean will be coming soon!

To learn more about Elizabeth's Hope and the very important work of the Children's Brain Tumor Project, please visit www.elizabethshope.com.

Bizzie Bowl 2013 – Stay tuned for more details!!

Tastefully Simple for TEAMSean – On Sunday, April 28, 2013, Cheoma Smith, a sales consultant with Tastefully Simple held a tasting party at the home of Richard and Brenda Ries. Guests were treated to a couple of hours of food, friendship and fun, and 20% of the sales generated from this event were generously donated to TEAMSean!!

Bizzie Lizzie 5k Run/Walk 2013 – TEAMSean was so excited to be a part of this great event that included food, beverages, and fun!! The yearly event was held on April 6, 2013, in honor of Elizabeth "Bizzie" Stein, a little girl from Morris Plains, NJ who lost her battle with brain cancer in 2011 at just 3-years old. Proceeds from this event went to the New Jersey Chapter of The Cure Starts Now Cancer Research Foundation, one of the only cancer foundations dedicated to a "homerun" cure for all cancers, starting first with pediatric brain cancer. To learn more, please click here.

WillPower for TEAMSean – On Wednesday, January 23, 2013, Jodi Cortes and Laura Fielding led a night of fitness, fun and prizes dedicated to TEAMSean. The event included a workout called WillPower & Grace, a barefoot cardio fusion class that strengthens the body from the ground up. A BIG thank you goes out to Natalie Casciola, one of Sean's pre-school teachers, for organizing this great event!!

2012 Past Events

Dine to Donate - On Wednesday, September 12, 2012, from 5-9 PM, 15% of your purchase at Five Guys Parsippany was donated to TEAM Sean!

Rock & Roll 10K - TEAMSean participated in the Rock & Roll 10K in NYC on October 13, 2012 to support Elizabeth's Hope and the Weill Cornell Children's Brain Tumor Project (the research effort led by Sean's neurosurgeon Dr. Jeffrey Greenfield). In addition to TEAMSean, a total of XXX participated in this event that resulted in raising almost $50,000 for the Elizabeth's Hope!!

Head for the Cure - TEAMSean participated in the Head for the Cure Foundation MetroKC 5k, held on Sunday, August 26, 2012, in Overland Park, KS. Organizations like Head for the Cure and others play a crucial role in funding the research needed to find a cure for Sean. The primary beneficiary of the funding from Head for the Cure is the Brain Tumor Trials Collaborative, and Sean's hospital, MSKCC, is a direct participant. You can learn more about this important work at http://bttconline.org, and know that your support from this event is going directly to research that will help to find Sean's miracle!

Bizzie Bowl – TEAMSean joined in this fun afternoon filled with flag football, great food and beverages, children's activities, music and more! This yearly event was held July 29, 2012, and is in honor of Elizabeth "Bizzie" Stein, a Parsippany, NJ girl who lost her battle with brain cancer in 2011. A portion of the proceeds from this year's event was very generously donated to TEAMSean!

Moving Towards a Cure® Brain Tumor 5K Run/Walk – TEAMSean participated in the this Miles for Hope event held in NYC on July 21, 2012, to benefit the Weill Cornell Children's Brain Tumor Project, a research effort being led under the direction of Dr. Jeffrey Greenfield, Sean's amazing neurosurgeon. Miles For Hope, the organization that sponsored this event, was founded to fund brain tumor research and clinical trials. You can learn more about this important effort www.milesforhope.org.

Relay for Life - An American Cancer Society event, the 2012 Relay For Life of Overland Park/Leawood, KS was a terrific event where TEAMSean was represented and supported by the eScreen Superheroes Fighting Cancer, held on June 16, 2012.

Frank Zimmerman Memorial Golf Tournament - This event, sponsored by the Wyndham Corporation in Parsippany, NJ, was held on June 15, 2012, to honor a colleague who lost his battle against a brain tumor last year. Frank's family and Wyndham very generously donated a portion of the proceeds from this fabulous event to TEAMSean.

Metro and Morris - The Storyteller Show at the Acoustic Café in Bridgeport, CT held on June 8, 2012. An acoustic performance by singer/songwriter Jim Morris, sponsored by the Metro Parrothead Club of NY/NJ/CT, with proceeds from the event going to TEAMSean.

Skate for Sean - TEAMSean, in cooperation with the Parsippany-Troy Hills Elks Lodge #2078, held its 1st fundraiser - "Skate for Sean" - on Saturday June 2, 2012 at Aspen Ice located at 16 Aspen Drive in Randolph, NJ 07869. This event included ice skating, face painting by Bella Faccia, strolling Magic by Marco, live music by Viagra Falls and Art of Play, and a silent auction. Thanks to all who came out and gave so generously to make this event such a huge success!!

Cinco Cares - This private event is held in May every year in Jamison, PA by dear friends of the Ries family. This year's event was dedicated to raising funds to support TEAMSean. Thanks to all who shared in this fun week-end and showed their support for the Ries family in so many ways!!

Donations can be made out to TEAMSean, and mailed to TEAMSean, P.O. Box 41, Mt. Tabor, NJ 07878.
Interested in participating in other ways with TEAMSean? Interested in ways you can help? Contact us at info@teamsean.org.